I was in college when I got diagnosed with spinal muscular atrophy (SMA) type 3. Learning that I might lose my ability to walk created an unexpected fork in the road. I put my dream of becoming an educator on hold to pursue motherhood before it became too difficult.

Three years after my diagnosis, I was married and the proud mother of two boys. I loved being a mom. With the exception of needing help getting up and down the stairs, I was able to find ways around the limitations of SMA to care for my children.

Single Mom vs. Stairs

Unfortunately, my marriage ended and I found myself in the role of single mother. I was concerned about how I would navigate parenthood alone.

I was living in a third-floor apartment, and getting up the stairs was only possible if I held onto the banister and pulled myself up. I was filled with anxiety when I wondered how I would manage carrying an infant and a stroller up and down the stairs while also attending to my toddler. I also worried about how I would get groceries to my apartment. The tasks were so impossible that I might as well have been living on Mount Everest.

The stairs were bars that imprisoned me. I had no choice but to rely on others. My neighbors helped me get my baby up and down the stairs. I tried not to ask for help too often because I didn’t want to become a burden. My dad stopped by on weekends to make sure I had enough food, diapers, and essentials.

Fear of Falling

As the children grew older and gained independence, life became a little easier. Still, SMA was relentless at putting obstacles in my path. Escorting the boys to school could be challenging when my muscles were fatigued. On winter days when snow and ice made walking more difficult, the fear of falling was daunting. I accompanied them as far as I could, then watched until they crossed onto the block of their school. On the way home, I sometimes fought back tears because I felt SMA was preventing me from fulfilling my parental duties.

When my oldest started picking me up, I was humbled. It wasn’t easy going from the one who picked them up to the one who needed to be picked up. I felt bad when I fell in front of them because I saw the concern in their eyes. I wanted to be a model of strength for them.

Setting Goals and Modeling Strength

I was living on disability benefits, so I returned to school to finish my degree and become a better provider. Being a single parent and a college student was the most difficult thing I have ever done. I sometimes worried that I’d fail at both, but I pushed forward because I knew I would be able to give them a better life after I started my career.

After graduating, I began working as a speech therapist and was proud to be an example of strength and perseverance. I later realized that the times that I struggled physically weren’t moments of weakness in their eyes. Instead, they were examples of strength. I’m so glad I took that turn down the path to motherhood. It has been my greatest achievement.

Columnists on mySMAteam discuss SMA from a specific point of view. Columnists’ articles don’t reflect the opinions of mySMAteam staff, medical experts, partners, advertisers, or sponsors. Content on mySMAteam isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.